Sunday, December 30, 2012

A year in review: I present to you the top 10 blog posts of 2012, as determined by number of comments per post (excluding contests). It was fun putting this together, reminiscing about the year that's gone by. I couldn't resist re-reading them all and remembering.10. Talking in '12: In which I reflect on years past and set a goal for 2012.9. Stop telling me that "things are going to be so hard": In which I lose my patience for, and speak bluntly about, the people who seem bent on pointing out a cloud around my silver lining.8. The search is over. We've found our communication solution.: In which we discover the app that will become Maya's voice.7. Necessity is the mother of invention:In which we create a makeshift solution to prevent
accidental hits on the iPad.6. Irreparable Harm: In which we join with two other families to take legal
action and protect the communication app that our children are using.

5. Stand Up:
In which I spread the story of another special needs mom who
was asking for help in fighting on behalf of her daughter.

Tuesday, December 18, 2012

Maya's progress is . . . interesting. Not typical, not quick, not slow and steady . . . it's often invisible---but wind is invisible too, and that doesn't make it any less real. Her progress is a secret---I'm never quite sure what she's observing, what she's learning, what her inner narrative is. Internally, I imagine that she's learning new things and making new connections everyday, but externally the growth comes in fits and starts----nothing, nothing, nothing, then suddenly something new.

And in the past week we've had 2 big somethings new.

First, Maya said Mommy. As you may imagine, hearing it after 4.5 years is a pretty sweet sound. Prior to this she could say "Mama" (and "Daddy"---of course that came first, because she adores her daddy) but not Mommy. Suddenly, a weekish ago, her mouth just . . . cooperated.

They had a field trip to Santaland that day.

Second, she can spell her name, which is pretty great. It's another indication that reading and writing will come, which is simply invaluable for a kid who won't be able to speak so clearly for a while. All the cool kids text instead of talking anyway, right? (She needs some scaffolding with her name still, but it will come independently, soon I think.)

And, just so that we keep things balanced, here's a picture of Will that I took this morning :)

Thursday, December 13, 2012

Who doesn’t love a holiday giveaway?I see my Facebook friends sharing photos and
liking posts all over the place to enter giveaway contests, and I may have
joined in a few myself.Many, though, I
ignore, because I know that if I won the item being given away it would just
end up collecting dust.

But not this one!

As long-time readers here know, I don’t give away a lot of
stuff.I don’t want to endorse products
that I don’t actually use, and I don’t want to seem like I’m working for a company or
selling something.When I mention a
product by name on the blog, it’s only because I like it, I use it, it works,
and I think that it might be useful for some of my readers.Back in March I mentioned one such
product-the Time Timer.

The Time Timer is a clever timer with a large disappearing
red section that shows the amount of time left for an activity. It provides a clear, visual representation of
how much time Maya has left in an activity, before a transition, how long
something has to cook for, etc.There
are really a ton of different ways to use it.This (short) video gives a bit more information about the Time Timer:

The folks at Time Timer have generously donated a 3” TimeTimer to give away to one lucky reader.I love the fact that it has a cover that flips over the top---and so
does one of our speech therapists, who tosses hers into her big bag-of-tricks
that she carries from session to session.The 3” timer also has the same optional audio alert that our 8” timer sounds
when the time is up—a short, clear 2 beeps, not a loud ring (which can be a bit
jarring for some kids).

Here’s how we use our Time Timer at home:

-time left on an undesirable task

-time until we go _____ (wherever we’re going)
-cooking
-time-outs
-time left until we need to clean up (or other transitions)

(back in March with our 8" timer)

If you’re a parent, a therapist, a teacher, a grandparent, a
babysitter—basically, anyone who is around kids, there are a ton of ways to use
the Time Timer---and now you have a chance to win one for free!

Giveaway Details: Entries will be accepted until midnight
(EST) on Weds, December 19th, and a winner will be announced on
Thursday, December 20th.Winner
will be chosen from the comments left on this blog post (see the various ways
to enter, below) using this random number generator (random.org link). Irrelevant comments (like “Thanks for the
giveaway”) will not be counted as entries.If you do not complete the mandatory entry, your other entries won’t
count. If the winner doesn't claim their prize within 48 hours I will pick another number.

Here's how to enter: (you can enter up to 5 times)

**Please remember to leave a separate comment below for each entry, and please remember to include an email address so that I can contact you if you win!**

Mandatory Entry:You must complete this entry to be entered
in the contest. Go “like” Time Timer’s
Facebook page (here).Then, leave a
comment on this blog post that says “I like Time Timer on Facebook.”

Thursday, December 6, 2012

Yesterday I met a friend for coffee.We each had our babies in tow (both little
guys, 6 months old and 10 weeks old) and our big girls were at school.Both of our older children have special
needs, and the conversation ebbed and flowed from special needs school stress
to sleep schedules for new babies.As our
visit ended, she mentioned getting a group together of moms with little ones,
since it can be isolating to be at home with a baby.

Something in me clenched.I hesitated to say yes, without knowing why.And then it clicked: here I am, starting
again.This time with a different child,
one unencumbered by differences and appointments . . . with him I am just a
typical mom.An average mom of an
average baby with universal “problems” (nap schedules, pacifier addictions).A mom who can watch other babies crawl around
and pick up toys and think oh I can’t
wait for that instead of oh . . .
should that be happening already? I guess we’re late on that one, too.The mom that I would have been, if things
with Maya hadn’t been so different.

And it made me realize that parents of children with special
needs suffer a double loss.The first,
the one most often discussed, is the loss of the-child-that-you-imagined . . .
the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a
given (stairs? maybe someday), the
loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph).

But the second loss, you don’t hear as much about.It’s more personal than the loss of the child
you thought that you’d have . . . it’s the loss of the parent that you thought
you would be. Where the-loss-of-the-child-you-would-have-had says I wish that my child could play catch with
me,the-loss-of-the-parent-you-would-have-been
says I wish that I could play catch with
my child.

While I’ve shed a lot of tears over the past four years, I’m
not sure that I ever realized that some were for Maya and some were for me. But now that it’s come to mind, I’m going to
sit with it long enough to mourn the mom that I would have been.

I would have been a mom who took her baby to music class and
clapped and played happily, without the little clench in my stomach as I
wondered if the other moms and nannies were wondering why my baby couldn’t sit
unassisted or clap or crawl like the other babies could.

I would have taken pictures of my baby’s comically messy
attempts at self-feeding, and scolded her for throwing food on the floor . . . instead of giving bottles for years, doing countless oral motor exercises, and
battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips, or coffee
dates with other moms & little ones . . . instead of being trapped at home by
our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself,
watching her run and climb but giving her some space to be independent . . . instead
of guiding her safely to the equipment, positioning her feet and hands and
prompting her to step-and-pull-step-and-pull.

I would have watched her run up to other kids and start
playing, and wondered what they were talking about . . . instead of holding my
breath when she approaches age-appropriate peers, wondering if they will shun
her, if she will notice, and how I should react.

I would have yelled after her to be careful as she took off running
with friends . . . instead of watching her giggle as children run past her so quickly
that she doesn’t have a chance in hell of keeping up (and so I laugh with
her and say wow! They’re fast! and
pretend that watching them and laughing is just as much fun as running around).

I would have reminded her to use kind words while playing . . . instead of standing behind her and translating her noises and gestures for other
kids.

I would have met and chatted with other moms, making small
talk about the kids and preschool and playdates . . . instead of shying away because
I didn’t want to talk about our life of doctors and therapies with them, I didn’t
want pity, and I didn’t want to make them uncomfortable.

I would have taken her on more fun outings . . . instead of taking
her to so many specialists.

I would have gone to birthday parties and socialized with
other parents . . . instead of dreading the moment when I walk into the room full of
same-aged children and think oh my god,
that’s what 2 years old is supposed to be like?

I would have played with her and thought about playing, or
maybe let my mind wander to other things (errands or what’s on tv tonight) . . . instead
of thinking about therapy goals and how to position the toys and then move her
legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to her to preschool in the
neighborhood, meeting local moms and chatting outside . . . instead of loading
my tiny, nonverbal three year old onto a bus to ride to a special needs
preschool downtown, then walking up to my apartment and worrying about the long
ride, and hoping that the matron would be nice and take care of her if she was
tired or sad.

I would walk with my girl, or sit in a coffee shop with her,
or take her shopping, and pay attention to her and talk with her and never give
a single thought to if people were looking at her, or wondering about us, or
staring.

I would talk with her, and enjoy the often humorous
observations of a toddler/preschooler . . . instead of spending (literally)
countless hours researching, developing and teaching a variety of communication
systems, each time hoping that she would be able to learn how to say more
things and that I could get a glimpse of what she thinks about.

Parenting would have been a much easier job . . . but, then again, I wouldn’t have appreciated
it.

I would have lamented over seasonal colds and illnesses, saying
things like we just can’t catch a break! when
we were hit with a few in a row . . . instead of knowing that we were kind of
catching a break the whole time by not having any larger issues to deal with.

I would have celebrated milestone moments with enthusiasm
and pride, but lost the magic of those milestones quickly . . . instead of marveling
at the unbelievable motor feats involved with something like sitting up
unassisted, or jumping. (Seriously---jumping----did
you ever think about how crazy it is?Somehow
you just will yourself up into the air and your legs make it happen.
Unbelievable.)

I would have complained about the hard work of
progress---potty training woes, a willfull child who dresses themselves in
mismatched or seasonally inappropriate clothing, a kid who jumps off furniture
or climbs onto countertops . . . instead of recognizing the feats of strength and
coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya.We would have had a ton of fun, I think, the
Maya-that-she-would-have-been and the mom-that-I-would-have-been.But I
certainly love the Maya-that-she-is . . . and without her, I wouldn’t have
become the kind of mom that she needed, a mom better than the mom that I would
have been.